Learning to Live Again

Learning How to Live and Have Fun with Fibromyalgia

My cousin got married this weekend. Nearly all of my family was there. It looks like the wedding was a big celebration/party/family reunion and everyone had a great time. Everyone except me. I wasn’t there. When you have fibromyalgia and chronic pain, it is hard — if not impossible — to attend big events like a wedding. You can’t be spontaneous with fibromyalgia. You can’t plan on being at an event months in advance. You never know how you’re going to feel on any given day, so it makes it really hard to make plans. I would’ve loved to see all my family members. I haven’t seen some of them in 6 years. But I couldn’t. Because I have fibromyalgia.

My cousin Lauren’s wedding. Pictured from left to right are my cousin Kristen, my cousin Lauren (the bride), and my brother Brian.

When you suffer from chronic pain and fibromyalgia, it takes a ton of planning before and after any event you attend . You can’t just RSVP as a yes and when the time comes hop in the car, go to the location, and have fun. Nothing is simple with fibromyalgia. My cousin’s wedding was in New Jersey. I live in Salem, Virginia. It would have been a 7 hour car ride, plus however many stops I needed to stretch, for my husband and I to attend. A hour’s car ride is the maximum I attempt right now. Even though my husband does all the driving, a car ride is draining for me. It leaves me in more pain than normal from sitting for so long. Long car rides drain my energy too. For me to go to the wedding, I would’ve needed us to drive up 2 days in advance so that I had the whole day before the wedding to rest and try to bring the pain back down . Sitting through a wedding without being able to get up and stretch would cause my legs and back to cramp up and hurt more. I’m sure I would’ve managed one dance with my husband at the reception. Between a dance and finding my cousin, the new bride, and her new husband to congratulate them, I would’ve been exhausted and nearing the end of my rope. There is no way I would’ve made it through the big party/family reunion the reception was. Everyone had a great time. I would’ve been exhausted. My head would’ve been pounding from all the noise and excitement around me. The lighting would’ve hurt my eyes and made my headache worse. I would’ve spent a lot of time sitting at a table, probably looking like I was annoyed when actually I would’ve been miserable and in a lot of pain. I would’ve left early because of how much pain I was in.

The planning doesn’t stop once it’s time for such an event if you suffer from chronic pain and fibromyalgia. You have to plan for how you’re going to feel after such an event. For me, I would’ve been exhausted and in a lot of pain from the wedding and reception. I would’ve needed a whole day to recover before a car trip back, but I’m sure we would’ve driven back the next day instead of spending more money on another night in the hotel room. The trip back would’ve been even worse for me than the trip home. It always works that way for me. I would’ve been incredibly miserable once I got home and I’m sure I would’ve needed 2-3 days to recover before I could go back to work. My 11-week leave of absence wiped out all of my PTO (vacation) time. I haven’t accrued much time since returning to work. I accrue it at a slower rate now that I’m only able to work 30 hours a week. I often have to take a few hours here and there for my bad pain days when I need to leave work early and go home and sleep. I do not have enough PTO to take 3-4 days off work for travel to and from the wedding and the recovery time I would need.

Pictured from left to right are my mom, Ann, my aunt Sarah, and my aunt Barbara (the bride’s mother).

Attending this wedding would’ve been fun if I was a normal, healthy person. But I’m not. I have fibromyalgia. Sadly, just about every part of this wedding would’ve caused me extra pain. The drive would’ve been the worst part, but all the other small stressors of an event like this would’ve spiked my pain unbearably high.

I used to attend events like this and travel with my husband and if it made my pain worse and made me exhausted, oh well. I ignored it and pushed through. Now that I know I have to listen to what my body needs and respect my limits, I’m struggling to learn how to go to events like this. I struggle with the planning before and after. I struggle with planning any trip or activity because I never know how I’m going to feel on any given day. It makes me want to give up and just not do anything like this. But I refuse to spend my days only at home or at work. There’s so much else to see and do and I refuse to miss out on everything because I have fibromyalgia. I’m learning my limits and what activities I can and can’t do. I now say yes when friends invite me out to dinner instead of no. I’m better about planning activities within the next month. I know how I feel now so I bet I’ll feel similar in the next few weeks. I haven’t yet figured out how to plan out activities or travel further out than that. I’m working on it.

I’m learning how to live again and have fun again even though I have fibromyalgia. It’s hard. It’s like chronic pain negates everything you’ve learned in life. You have to unlearn habits that are now unhealthy for you. You have to figure out what you need to do to get through each day, to keep working, to stay close to family and friends, to be a wife, to be a friend, to be healthy. Chronic pain forces you learn new things, new ways of doing things. I know I can do all the things I used to do, I just have to figure out new ways to make those things happen. I’m not going to figure all this out overnight. It’s something I work on a little every day. I learn something new about living with fibromyalgia every day. Maybe I’ll make it to the next wedding in the family. I’ll be stronger and know a lot more about myself and my new life with fibromyalgia by then.

I will learn how to live and have fun again even though I have fibromyalgia. I will not let fibromyalgia rule my life and determine what I do every day. I control what I do, fibromyalgia does not control me. I don’t have all the answers about living with fibromyalgia, but I’m working hard to find them. One day I’ll figure everything out. One day…

I’m so sorry that I can’t go to places you wanted to go, I hope you learn how to live better with fibro. It’s not easy but it’s not impossible.

I have fibromyalgia too but I think that my experiences of living with it and accepting it are very different from most people I know, I think it’s because I was born disabled amd had a lot of pain even as a child so I learned to have a different kind of life very soon, other illness restrict my life more so the process is not the usual kind I read of healthy people that suddenly got sick and needed to adapt and mourn.
The pain is terrible and I wish things were easier but I didn’t lost things I used to do before because of it. Not sure if this is good or bad.

I think time, creativity and experience helps with learn how to live with chronic pain. Everyday you learn something new and it get’s better with time.

Thank you for sharing. Sounds like you do have a unique perspective on things. You do have to learn to live a different kind of life with chronic pain. I like that phrasing and may have to steal it if you don’t mind. I’m sorry you live with pain too. Time does heal wounds, at least some. Thanks!

Wow! I can so relate!! I had to miss my dearly loved Grandpa’s funeral because of this hellish illness!!! I am struggling to keep working and I want to work, not only for financial reasons, but because it makes me feel normal!! I don’t get any vacations, because all of my PTO is used up on my ADA time! Thanks for the post!!

I’ve missed two weddings, my brother’s college graduation, my grandfather’s funeral and many other family functions because of my fibromyalgia. At first, I wasn’t honest with my family and they didn’t understand. They didn’t like that I was “too busy” not to come to such events. Now, I’m very open and honest with them about what I’m going through and they understand and are supportive of my choices. My mom just suggested this week that next time there is a family get together she’s going to take her laptop so I can have a Skype session with everyone and be able to visit without being there. I thought that was a great idea. I like working as well. It keeps me socializing and gives me a reason to get up and get moving every morning. I’ve very lucky to be able to work a 30 hour week work schedule. It makes a big difference on my pain and energy levels. I don’t get a lot of PTO and the time I get is used up on my bad days. I’m trying to save up enough to take a day or two off at Christmas but we’ll see. Hang in there! You aren’t alone in this!

I suffer from fibromyalgia & 5 other debilitating deceases for close to 9 years all from a minor car accident. I lived in hell for 8 of those years trying everything possible the Dr’s suggested, some helped a little but a lot of times only increased my pain to extreme. I couldn’t drive 20 mins. or stand 20mins or even sit would cripple me up. I was sick constantly with a low immune system, had nerve pain zigging throughout my body on top of the stiffness, swelling & constant throbbing pain. Some days even the hair on my body hurt, my face felt like I was hit with a baseball bat & my arm & legs felt like lead weights & had numb tingling sensations shooting through them. I would wake everyday after a restless sleep & felt like hell, not wanting to move but I had to, so I refuse to stay in bed… get moving & dress as my feet screamed in pain & joints snapped & cracked I’d start my unbearable task of getting ready to face the world & pushed to do something everyday. I closed my hair salon the first year when I realized I’d never return to my traded that I loved, I was told I had Chronic pain but was never told what happens to you or how to deal with it. I seen 85 doctors that said my only hope was narcotic meds. Which I tried & hated, I was sicker on them & it never really helped, only messed my system up even more. I went to physio, chiro, acupuncture, exercised, swim therapy, psychology therapy, yoga, had needle injections, Chronic Pain Clinic, & relaxation techniques like I said some helped a LITTLE but never helped me live the life I desired. I researched for 2 years for hope & started alternative medication. Nutritional approach & slowly had some relieve but not to the extreme I desired, my last attempted was with Reliv Optimal Nutrition I was scared because I was grasping onto hope in a can that I never heard of. Within the first week I felt the changes I slept like a baby & felt refreshed in the morning(this was HUGE) my energy started to increase & I started feeling for the first time in years like I never felt before(AMAZING) Still in pain but bare able in 2 weeks! My digestion was improving & only got better with every shake. I haven’t been sick since I started on Reliv & after 3 months my pain faded, swelling disappeared & cracking stopped. I’m still in disbelieve that the answer for me was so simple & I’m spreading the word at how wonderful I’m feeling each & everyday. I still have my decease I feel it when I do to much or the weather is bad but I’m living life as I should; no longer crippled up sick & in pain, just a little stiffness from time to time after 7 months on RELIV! I
Cheers and God Bless!
Carrie Leach

thank you for this post. i just made a new friend and u had to explain this to her, how i can’t plan ahead and will often cancel if i do. so now when i feel great, it is a mini spontaneous party and my friends are OK with that. 🙂

and yes, for a wedding out of town i would have had to gone there dates early and rest beforehand, too. impossible yet necessary, hey? i miss out on a lot ,too. :::sigh:::

I’m glad my post helped you and helped explain what you’re going through to your friend. I’ve found being honest with your friends and family about what you’re going through is the best option. Then they understand if you can’t come to something or have to cancel at the last minute.

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I'm reshaping my life every day, learning how to live - really live - with chronic pain. I suffer from fibromyalgia but I refuse to give in to it. This blog is about my search for balance in life. My path to making the best of my life in pain. My search for the best path out of the mess fibro has made of my life. I hope that writing about my experiences and my journey will help me but will also help anyone out there reading this as well.